Thursday, March 15, 2012

Making the Rounds

This week is all about specialists. The list is extensive. Jie Jie's care is being pieced together since Kaiser is not referring her to the center of excellence that she needs in another state. To know that someone at a desk somewhere is counting dollars above lives, infuriates and offends me greatly. Kaiser would actually SAVE money if they referred us out!

Well, we finally got to go to physical therapy and the first thing they said was, she needs an orthotic! Duh! I've known that since day 1 and my friend, who arranged for all of Jie Jie's chiropractic care and even paid for it, said it, so did the chiropractor specialist who saw her feet. Why didn't the orthopedic specialist do anything months and months ago when we consulted with him? His final words, there's nothing we can do, come back in a year and we'll take x-rays then.

Other tests this week have shown some things of great concern, but reversible, provided immediate action is taken, and if there isn't permanent damage already, which there does seem to be a little. I'll know more next week after tomorrow's MRI and labs are evaluated.

I got a lot of validation today from key people, especially the physical therapist, who actually asked me, "How did you know to do these things," when I told her all I've done from the start with Jie Jie. She said I missed my calling and should have been a physical therapist! It was a high compliment.

I have received Jie Jie's referral for the Spina Bifida clinic and the first appointment available isn't until June. Remember, Jie Jie does NOT have spina bifida, and attending this clinic isn't the best option, but, in the Kaiser system, it's the only place they can stick her and they say that her spinal anomalies present similarly enough to SB to justify putting her there. Thankfully, all the people I've spoken to so far this week have been GREAT! I especially have to thank the neurologist who totally took it upon herself to organize my daughter's care and arrange all the specialists.

My daughter and I are entering a totally new world, a world that no one ever wants to enter, but so far, I've been able to navigate it alone and do a great job of informing myself and advocating for my daughter. This is what will make all the difference to her quality of life and her potential in the long run.

1 comment:

Lynnea said...

I just want you to know that I appreciate you writing and sharing your journey...I've learned alot from reading about Jie Jie's medical journey. Can't wait till Sissy is in the mix too!
Blessings and try to get some relaxing in this weekend ;)